“One bad day is not a bad lifetime and you’re not alone.”– Sharon
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Managing Relationships and Finding Your Support Network
Maintaining social relationships while living with narcolepsy can be a challenge. Family, friends, or romantic partners may not always understand what you are going through, and your symptoms can get in the way of connecting with others. Having people you can turn to is important for navigating the ups and downs that come with living with narcolepsy.
Tips for Managing Relationships
Be open with others about how narcolepsy affects you
Prioritize your most meaningful relationships
Plan social or romantic engagements during the times of day that you typically feel most awake
Talk with your healthcare provider about how you feel about your relationships and things you might be able to do to help better manage your relationships
You are not alone.
Hearing first-hand experiences from other people in the narcolepsy community can help with talking to family and friends about narcolepsy and building a functional and meaningful life.
See how others with narcolepsy have found support
Find the right sleep specialist.
– Scott
- Connect with people who have been diagnosed, either online or in person.
– Sharon
- Having narcolepsy can leave you feeling self-conscious in the workplace.
Strategic disclosure was better than allowing someone the opportunity to label me.
– Ijeoma
- Being open and honest with your friends and family is incredibly important.
– Emily
- Find a counselor who you can speak candidly with.
– Matt
- Surround yourself with people who bring you peace.
– Gina
Talking to Your Friends and Family About Narcolepsy
Managing Relationships and/or Social Life With Narcolepsy
Support System for People Living With Narcolepsy
Finding Your Narcolepsy Support Group
Talking to Your Friends and Family About Narcolepsy
Andre
Living with narcolepsyAndre describes how he sat down with the people in his life and began a journey of education and understanding.
Managing Relationships and/or Social Life With Narcolepsy
Gina
Living with narcolepsyGina explains why you shouldn’t feel guilty setting boundaries within your relationships.
Support System for People Living With Narcolepsy
Emily
Living with narcolepsyEmily shares the importance of having a support system and who she includes in hers.
Finding Your Narcolepsy Support Group
Sharon
Living with narcolepsyFinding your support group may take time, but be patient and remember that you are not alone.
Talking to Your Friends and Family About Narcolepsy
Andre
Andre describes how he sat down with the people in his life and began a journey of education and understanding.
Managing Relationships and/or Social Life With Narcolepsy
Gina
Gina explains why you shouldn’t feel guilty setting boundaries within your relationships.
Support System for People Living With Narcolepsy
Emily
Emily shares the importance of having a support system and who she includes in hers.
Finding Your Narcolepsy Support Group
Sharon
Finding your support group may take time, but be patient and remember that you are not alone.
Being able to talk about what you're experiencing, just getting it off your chest and out of your head, definitely helps a lot.
Emily, living with narcolepsy
Vivid dream-like experiences that occur while falling asleep or while waking up.
Occurs at night and includes dreams; muscles are not active to prevent people from acting out dreams.
People with type 1 narcolepsy can be diagnosed by their cataplexy or low levels of hypocretin (also known as orexin).
The cause of type 2 narcolepsy is unknown.
Restorative sleep state with decreased muscle tone.
Daytime and evening habits to improve sleep.
Brief total loss of voluntary muscle control when falling asleep or while waking up.
Also known as orexin, hypocretin is a naturally occurring chemical in the brain that helps maintain wakefulness and prevent non-REM sleep and REM sleep from occurring at the wrong time.
Unintentionally falling asleep due to excessive daytime sleepiness; “sleep attacks.”
The inability to stay awake and alert during the day; a constant need for sleep or unintentionally falling asleep.
A naturally occurring chemical in the brain that helps maintain wakefulness.
Vivid dream-like experiences that occur while falling asleep or while waking up.
Frequent shifts between different states of sleep and wakefulness at night.
Difficulty focusing or concentrating.
Brief loss of muscle tone with retained awareness, often triggered by strong emotions.
Performance of routine tasks without awareness or memory.